Re: Re: Warning Long

[Guest guest]

, I was diagnosed with the endo in May '01 Igan diagnosed Oct '01 and the

IC was about a year later in Oct '02. I thought that after the endo (laproscopy)

that the pain would go away... well it didn't. I dealt with it for a year and I

knew it couldn't be the endo since i had it surgically removed. I had kept

complaining to my neph and he told me that if any pain (flank) that i would have

from the Igan that it would be more a dull ache well this was not dull at all! I

finally got fed up the next year after going to the neph and the urologist. my

Urologist kept putting me on antibiotics because it is like having a UTI and

Kidney infection. It's sad because it was to the point that my nurse would tell

me to come in the back and pick out my own meds. It was truly sad that it took a

long time to diagnose. And the only reason that I found out that i had IC is

that I started doing research on my symptoms because if you have never had them

they are hard and embarrassing to explain. So

i did research for about a month and found IC, i left a note with my doctor and

told him that this was exactly what I was feeling. Well I had the bladder

distention and low and behold I had IC. I have been on Elmiron and Amytriphtlyne

(SP?) for almost 2.5 years. They don't know why the Elmiron helps so much but

for me it has been a wonder drug... until the past few months, endo coming back

has brought it out of remission.

I had blood in my urine at 19 (from Igan), that is when I became the human

guinea pig. I didn't start having the pain until about 22/23. So my kidney

disease started up before the IC. The hardest part is every disease that i have

is very knew to doctor's and IC was always said to be a psychological disease

that women had. Some doctor's still believe that. It is crazy that it is the way

it is. I read this seminar that a doctor in California gave it was Pain

Management and Interstitial Cystitis. It is amazing how doctor's treat IC

patients. The hardest thing that i read was a scietist in France figured out how

to implant IC into a rats bladder. This guy made the doctor's watch the video.

In discription.. they show the rat wiggling around obvioulsy in pain. then in

all of a sudden the rat curls it's head to its bladder area and began to rip

it's skin open and ripped out it's bladder. That is how IC patients feel.. that

pain is horrible, I have had many time in the past few years that i

have almost grabbed a knife and stabbed my stomach I guess psychologically you

feel like you will feel better if you did. Ripping out the bladder would be

better than to be in pain all day long. Sorry this is so long. I will try and

find that link and send it to you. Did you have your bladder extended to see if

you had IC? Jill H

angeldragonfly@...> wrote:

Hey Jill,

Did you have the interstitial cysitis before the IgAN? I was asking because

years ago when it was first diagnosed that I had gross hematuria, I was referred

to a urologist. I had a cystoscopy done (which I vowed to NEVER have done

again). It was ruled that I had IC with some kind of tumor on the outside of my

irregular bladder, possibly endometerosis.

It was never followed up but I have had a laproscopy since then and no endo, no

mention of tumors or a funky bladder. I can totally relate to the pain of IC, I

used to worry before I even knew I kidney disease that I could get a kidney

infection and not even know now it. Now it's even more of a fear with already

less than perfect kidneys.

Do you take any meds for the IC...I used to take something that changed my urine

to a bluish/green color...VERY effective but it's not available here in Canada,

or atleast it wasn't 12 years ago.